Why I Love Tonic: Julie Desch, Palo Alto, California

I'm 50 years old with cystic fibrosis (CF). A lot has been discovered lately to help people with CF, and I benefit from much of it. The problem is that it seems the more that is discovered, the more there is to remember to do. New medications, new types of treatments, more emphasis on exercise, more aggressive treatment of lung infections with IV antibiotics...it all takes time! Add normal activities of life to this, and chaos easily ensues. Serious organization is required, and Tonic fits the bill. Cystic fibrosis is not an easy illness to live with, but Tonic makes it more manageable. -- Julie Desch, Palo Alto, California

How Tonic may help kids with cystic fibrosis stick with exercise

Getting enough exercise can be a struggle for most of us, but for some it's particularly challenging — including children with cystic fibrosis (CF). Now doctors at the University of California, San Francisco, and Stanford University, led by Mona Luke-Zeitoun, are trying a new approach: They're providing personalized exercise coaching and the Tonic self-care app to kids with CF in the hope it'll make it easier for them to stick with their workout regimen.

Here's how the study will work: A personal trainer will work with the children and their families to design an individualized exercise program and teach the kids various exercise techniques. For the next six months, the trainer will check in weekly to monitor the children's progress, modify the exercise program as needed, and provide support and positive reinforcement.

Where does Tonic fit in? "The patients will use the newly developed iPhone app Tonic, with the help of the personal trainer, to define, monitor, and maintain their exercise," explains Dr. Luke-Zeitoun. "From our experience, and based on prior research, patients' adherence to exercise was significantly influenced by frequent contact with and reminders from their personal trainers. We therefore think that Tonic has the potential to play a crucial role in helping patients adhere to their exercise regimens in the long term, even after termination of their 6-month training program."

The children's health will be evaluated several times over a 12-month period. The researchers will look at how well the kids are breathing and their lung function, their strength, and their overall quality of life. These measures will be compared with a control group (similar children who won't get exercise coaching and aren't using Tonic) to evaluate the effectiveness of INSTEP, or individualized non-supervised training exercise program. "If INSTEP is successful, this could be used as a method to improve the overall health and well-being of these children," says Dr. Luke-Zeitoun.

We'll report back when the study is done to let you know how the kids are doing.

Tonic and Me: Traversing the Winter From Hell

Julie Desch, an early user of Tonic, is just an amazing person. It's not just that she has she achieved middle-age, a rarity amongst people with cystic fibrosis. It's also that she does it in style, continuing to be far more active and athletic than most healthy people. For example, she recently became an RKC (Russian Kettleball Challenge) instructor, surviving a three-day ordeal in which the other participants, not all of whom passed, were hardcore trainers, athletes, and military types (read about this adventure). Even more astonishing is that she managed to do this in between some very serious health episodes, a few months she describes as the "Winter From Hell".

Here she describes how Tonic helped her traverse this difficult period, and offers some advice to other Tonic users:

Tonic and Me:  Traversing the Winter From Hell

There is good news and bad news about getting old with cystic fibrosis.  The good news is that I am getting old with CF!  How great is that?  Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday.  I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.

Living with an unpredictable illness is not all mirth and laughter, though.  Some aspects of getting older are a bit more frustrating, at least for me.  This is where Tonic, a new iPhone/iPad app, enters my story.  As you probably know, staying healthy with CF requires more and more effort with age.  There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do...pretty much everything.  Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent.  This is poor design, but it is what it is.

I noticed it first with Advair.  I can never remember if I have taken it.  I don’t know... I seem to have a mental block.  The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc.  While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.

I have officially dubbed this past winter, “the winter from hell.”  For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months.  If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access.  IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used.  When you forget to do this, 1) brrrr, and, 2) the infusion takes forever.  Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins.  I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week.  Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item.  Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things.  Wink.  But I hate hospitals, and only go in if it is absolutely mandatory.

Enter Tonic.  As luck would have it, I was able to beta test Tonic this “winter from hell." Tonic is an app that helps you to remember and track whatever you need to track.  Setting up Tonic is a simple task.  You simply make a list of all that you want to remember and track.  It took me about 30 minutes because my list of “tonics” was enormous.  When it was done, though, my trusty little iPad would bleep whenever I had to do something.  Take out med (bleep).  Infuse this (bleep).  Take this (bleep).  Eat (bleep).  Weigh yourself (bleep).  Eat more (bleep).  Trust me, the thing was bleeping all day, every day of each exacerbation.  But I was so completely on track!  I missed nothing.  Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it.  This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me)

In summary, Tonic is just what I needed at just the right time.  I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things.  If you decide to give Tonic a try, let me give you two hints.  First, use it for all of the things you do for your health.  Everything. Really.  Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game.  For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate

Second, remember that the idea is to make your life easier, not to add another chore to your day.  When my life is so complicated that I really need help, I use Tonic.  But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background.  It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data.  You will find your own balance.

Julie posted this story on her own blog SickAndHappy, and on a couple of popular sites for the cystic fibrosis community: CysticLife.org and CysticFibrosis.com.